The zebra is the official symbol of rare diseases in the United States and is noted for its black and white stripes, which are central to its uniqueness. Everyone has his/her own stripes, those characteristics that make each individual distinct. While each of the more than 7,000 rare diseases are unique, there are many commonalities that unite the rare disease community. In the spirit of raising the profile of the rare disease community at large and celebrating Rare Disease Day, this year NORD will promote specific ways that individuals, organizations and groups can show their stripes.
LIGHT UP THE WORLD FOR RARE DISEASE DAY®
Since the creation of Rare Disease Day in 2008, it has been a time for the rare community to come together, find support, and shine a light on rare diseases across the globe. This year, Rare Disease Day will look a little different here in the United States as we connect virtually instead of in person due to the ongoing COVID-19 pandemic.
There are many ways you can still Show Your Stripes® for rare diseases and make this day impactful and celebratory. One way is to help our community light up as many buildings and landmarks as possible in Rare Disease Day colors on or around February 28.
This concept originated in 2019 when the Empire State Building in New York City was striped in Rare Disease Day colors thanks to the work of RocketPharma, a member of NORD’s Corporate Council. The image of such a famous landmark shining bright for Rare Disease Day was an inspiration for many.
There are nearly 7,000 diseases and conditions considered rare, each afflicting fewer than 200,000 Americans, in the United States, according to the National Institutes of Health (NIH).While each of these diseases may include small numbers of people, rare diseases as a group strike almost 30 million Americans; many rare diseases are serious and debilitating, significantly impacting the lives of those affected.
Individuals and families impacted by rare diseases often experience problems such as diagnosis delay, difficulty finding a medical expert, and lack of access to treatment or ancillary services. While the public is familiar with some rare diseases such as Lou Gehrig’s disease and sympathetic to those afflicted, many patients and families stricken by less widely known rare diseases bear a large share of the burden of funding research and raising public awareness to support the search for treatments.
In Maryland, thousands of patients and caregivers, medical professionals, researchers, medical companies, and nonprofit organizations such as National Organization for Rare Disorders (NORD) will participate in this observance.
It was proclaimed by the Calvert Board of County Commissioners that February 28, 2021, be known as Rare Disease Day in Calvert County. And it was further proclaimed that we invite all citizens to duly note this occasion.
Margit Miller / Calvert Beacon